The ups and downs of recovery

Many people think that we have a fully recovered child and all is peachy…and I never want to imply that we don’t have struggles and we don’t have issues we are still working onl.

We do. He is not metal free yet and that means we have issues. My son has come so far from where he was, farther than I ever imagined. Every once in a while we get a reminder that we still  more to go. I call these “the ups and downs of recovery”. You get awesome days when they finally master something, or some delay is gone for good. Then you get days when you’re reminded that while they are doing excellent, they are not quite there yet. Today was one of those days.

We took him to our local museum for children. It is entirely exhibits that are interactive and the children play to learn in various settings with various tasks. It’s really an exciting awesome place. He’s been waiting a long time to go. He had fun. I got sad.

While I know he’s achieved amazing feats in 3 1/2 years and things we never thought would be fixed are fixed (like auditory processing)…today I was reminded that there is more work to do. We still have social gaps to work on.

Here are some examples of what I mean:
Here is a museum full of play exhibits and my son is walking to each exhibit and asking us “what does this one do?” or “what do we do here?”, when there are tons of kids already playing it and he should see what to do by looking at them. But he didn’t. We had to tell him or show him. I encouraged him by telling him to investigate and look and try it. If he could not figure it out we’d show him. He also walked up to kids and began to tell them how to play, and what they should be doing like he was the adult or boss and should be directing the whole thing. They ignored him but he would keep talking until they went away. He didn’t get the cues that they weren’t interested. Or that he was not “playing” by doing this. He also walks up to adults to “inform” them of how things work too. Very embarrassing.

Or if a kid was doing something in a way he thinks is the “wrong way” he’d go over and take over and correct them. Other kids were doing this too though so maybe that’s somewhat normal. I would intervene and guide him on what is more appropriate of course, or he won’t ever learn them. It’s hard to correct him because he gets upset, but how else will he know?

Needless to say I felt like an oddball there. Not to say there weren’t other kids on the spectrum there, there were. Just that sometimes I forget that we came so far, but we still have more to go. I don’t see his querks anymore and while most all of them are gone it becomes really obvious among 200 other kids what isn’t gone.

He also rushes from one display to the next without spending more than 3 seconds on one thing….very hard to enjoy stuff that way. There were a few exhibits that captivated him but they involved playing in plastic pellets in a sandbox type environment.

I am also learning how he learns and that he has trouble when it comes to the eyes and brain communicating. He wouldn’t quite meet criteria for dyslexia but yet what he describes to me fits somewhere in that line. He tells me he gets confused with the symbols for math. That plus signs, minus signs and equals get mixed up in his brain. He does better when numbers and letters are not mixed together or he’s only doing one form of math. When he reads he will often substitute a similar looking word for what is really there, he loses his place very easily. When he was in kindergarten they told me he had something called Irlen’s Syndrome. For him the words would move on the page. This happens mostly with fluorescent lighting. He says the school lights were too bright and made it hard to read. We have seen improvements in this area with no therapy just chelation, but some issues remain. He reads quite well now, but it tires him out.

I’m not complaining…because I know we are supposed to have issues still. He isn’t supposed to be 100% yet with only 77 rounds….and perhaps he might never be and we may always have small differences but I know that we are getting into the tail end of the learning issues now….but it doesn’t’ t make it any easier to swallow as a mother.

That this didn’t have to happen to him if he was not given those stupid vaccines.
The only comfort is that he doesn’t see these things as issues. He does not see the social discrepancies, or that no one else has to ask what to do with pulleys for that thing over there. He is not bothered by the lack of social interactions. He is happy for the most part and that’s a comforting solace for me.

I know that in time we will look back and these issues will fade away too. There may be others by then as we make our way through recovery. With the huge gains and learning problems that are gone….this too will come to pass.


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